Friday, March 18, 2011

Advocacy in Action!!!

This past Saturday through Tuesday, I once again had the opportunity to go to Washington, D.C., representing the State of Rhode Island, as a JDRF advocate for Type 1 Diabetes. You all know by now, that my wonderful 21 year old son, Edward, was diagnosed 9 years ago today. So much has changed since then. Edward was just a little boy. Now, he is a young man, a senior in college, and has managed his daily health care for 4 years on his own w/ tremendous responsibility. I have said it before, I will say it again and again and again, we are so proud of him.

Tremendous changes have also taken place w/in the diabetic community. The insulin pump has emerged as a priceless piece of technology, along w/ the great strides being made w/ the continuous glucose monitor. Last year we successfully secured a multi-year renewal for funding for hundreds of millions of dollars for research for the Special Diabetes Program, as advocates from across the country descended upon Capital Hill. This year we presented our Congressmen and Senators with the artificial pancreas as a new technology. The artificial pancreas has demonstrated remarkable results in the hospital setting; now trials need to be done in the 'real world' or outpatient setting. This project needs FDA approval, and signatures from our leaders to move this project forward was our collective goal.

I was blessed this year to have two fellow Rhode Islanders running with me. Eileen Bristow, who has lived w/ Type 1 for 42 years, and and Kerri Morrone-Sparling who was diagnosed when she was 6 years old. Kerri's blog, 'Six Until Me', links into a growing community of Type 1 bloggers. Kerri is a new Mom and here is a small portion of her post on our visit to 'The Hill':

'All we did was share our stories. (It was like blogging out loud.) But we could see our words hitting home. "This kid?" I showed them a photo of BSparl. "She's not diabetic, but I am. And I need to be here for a long, long time so this little bird can have a healthy mom to take care of her. I'm not tugging on heart strings; I'm just telling the truth." This was my first time ever talking to someone outside of the community about how diabetes may affect my daughter, and the edges of those emotions were raw. Listening to Eileen and Amy share their stories made an impact on me; they hopefully made an impact on people whose support we need, as well.'

Once again, a hearty, THANK-YOU, to the Staff of the JDRF Office in D.C., for putting together yet another all important Government (few) Days. We have renewed hope for our children, friends and family as technology becomes more and more cutting edge, all most prayerfully leading to a CURE!! And for my beloved son, we remember this very day, 9 years ago, when you were diagnosed w/ Type 1 diabetes. Our lives changed forever, and in many ways for the better. We are humbled to be part of such a brilliant and determined community!!


Azure Islands Designs said...

What a great thing you and your delegation are doing Amy...but then I know you couldn't do otherwise!!!

You must be so very proud of what has been accomplished...I know I am for you!!!!!

Of course Edward is managing well...he had you as a teacher!

Who said we couldn't make a difference? You've proved them wrong, time and time again in this situation!

Enjoy your weekend!

Amy Lilley Designs said...

Thank you Heather...Advocates from across the country were there and between Mon/Tues there were over 500 meetings, specifically about the artificial pancreas.

Last night our Rhode Island Branch had their annual Gala, so for me the timing was great, as there was alot to talk about, besides all the fun of getting all dressed up and staying out late...LOL!!!....really tired worth it all...again, welcome back my Friend...XXXXXXX

Scott K. Johnson said...

Thanks for working so hard on behalf of your son, which in turn also benefits so many of us out here living with type 1 diabetes.

I was very impressed by all of the parents and volunteer advocates I met over the weekend.

I look forward to meeting you in person next year and visiting for a bit!

Michael Hoskins said...

Thank you for doing what you do and sharing here in the ever-growing Diabetes Online Community, Amy. Like others have said, it was so incredibly inspirational to be around so many dedicated and passionate advocates and I'm so honored to have had the chance to be a part of that. Thanks for representing your son, Rhode Island, and all of us living with diabetes. I'll look forward to reading more and seeing you around the DOC!

Amy Lilley Designs said...

Scott, I can not help but work so hard on behalf of my son, and now the ever growing world has expanded expeditiously from 1 week ago!!! The Mom's and Dad's are a force to be reckoned w/, and from the other side, sitting and listening to Eileen and Kerri tell their stories was beyond guys are my heroes.
YES, I will look forward to meeting you in person as well, but, I would say that we're off to a good start on-line...BE WELL!!

chhipa said...

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Amy Lilley Designs said...

Michael, thank you for stopping by and for your most thoughtful comment. It WAS inspiring being around so many passionate, dedicated and brilliant advocates...I felt it an honor as well. Hopefully, we will meet one day in person. Take good care of yourself!!!!

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